Saturday, March 18, 2017

Neither of my parents were able to complete high school, and their dream was that I go to college. My dad always wanted me to be a teacher. When I was in elementary school, he got colon cancer. Every year after that, with each clean exam, we could breathe a little deeper. And then it happened, just when he reached the 8 year mark, when we thought he would be cancer-free, they found the metastasis to his liver. I was 16 years old.

Years later, my mother and I cried when we heard on the radio that they had found an amazing treatment for colorectal cancer that might have saved my father’s life. One less person that will have to go through this, we said.

My dad didn’t make it until I graduated high school, but he did go with me to my interview at my dream college. All through my studies, I knew if I could just keep one person from suffering the way my dad did, it would not be in vain, which lead me to go into research for those with familial cancer and cancer prevention. And I did become a teacher in a way. I am a professor, training the next generation of researchers. I march for my father, for all the new discoveries to make our lives better, and for my 5-year-old daughter who is just discovering science.

Friday, March 17, 2017

I celebrate science because it allowed me to have this picture, which is the most precious photo I have. I don’t celebrate the science behind digital cameras in a technical sense. This is the only photo I have with my mom and my son. My mom died two days before Thanksgiving in 2014, almost precisely a month after I took this snapshot the day after he was born. She was 64 years old.

Though she’d already been sick for quite a while, my mom was diagnosed with myelodysplastic syndrome (MDS) shortly after I had my daughter in 2010. MDS is a rare disorder of the bone marrow, which appears to be caused by environmental triggers such as excessive radiation exposure. She was so anemic and weak that she could hardly hold my newborn daughter. A few months later, it became clear that she was not responding well to initial treatments, which included medications, blood transfusions, and eventually, chemotherapy.

My mom had a bone marrow transplant (BMT) when my daughter was about 18 months old. Her donor was anonymous and non-familial – all I know is that he was a middle-aged man in Germany, and they matched on the international donor registry (for more information, see bethematch.org). After the BMT, we didn’t get to see her at all for over a year – kids carry too many germs for BMT patients. That year was hard for my mom and her caretakers; it was a year full of IVs, too many days in the ICU, too many trips to the ER, a heart attack, lots of boredom, and at the very end, a broken hip. But at the end, once her leg healed, she was doing okay.

She did okay for about two years, other than being susceptible to every virus that went around, and developing graft-versus-host disease in her eyes, which made it hard for her to read and to be outside on sunny days. She was doing so well that her BMT specialist at the University of Michigan Cancer Center told her she could come out of retirement and return to her job as a school social worker. She was definitely healthy enough to care for her granddaughter while her second grandchild was born, while I recovered after his arrival by c-section.

Yet a month after my son's arrival, without any warning she developed septicemia. She was unconscious by the time the ambulance arrived to rush her to the hospital, and couldn’t even be stabilized sufficiently to get a CT scan. She passed away about 24 hours after being admitted. I am ever grateful that she was not in pain, and that she was unaware that she was so ill.

I realize that this sounds like a lot of doom and gloom for a celebration. I march in her memory, and in the hopes that research will continue so other families have hope when faced with such grim diagnoses. Truly -- I miss her every day and my heart will always break over this loss -- but the fact that she made it for two fairly healthy years after recovering from the BMT is a scientific achievement worth celebrating! My mom celebrated science, and would be marching on April 22 if she were still here (though likely in the Ann Arbor sister march). Even now, despite my broken heart, I still celebrate science for the miracle of that BMT that kept her with us for those two years. Without that, I wouldn’t have this most precious of photos to share with my son, and my daughter wouldn’t have her special memories of her last visit with her grandma.

For Rocky Hoff, my best friend’s father, lost to frontotemporal dementia.

For Toby Levy, my husband’s grandmother, lost to vascular dementia.

For Marina Cholanian, a friend and brilliant neuroscientist who happens to have epilepsy.

Years ago, I decided to dedicate my career to science because medicine still had too little to offer these people. There are so many unanswered questions and we need the answers to conquer these diseases. And we can conquer these diseases. After 6 years of PhD training, 1 year of postdoctoral training, 5 years at the Alzheimer’s Drug Discovery Foundation, and now at the American Epilepsy Society, I am intimately aware of the frustrations, challenges, and roadblocks on the paths to cures.

We can conquer these diseases if we work together and strive to be better. Government-funded scientists cannot do it alone, often lacking the training and resources to take a discovery all the way to the clinic. Industry scientists cannot do it alone, lacking the incentive to invest in high-risk innovation, particularly for those cures that cannot promise large profits. There are ways to improve the system to make the research more efficient and effective. The scientists that I have met along my journey have a commitment to helping patients and to seeking truth that gives me hope and courage. And when I kiss my children goodnight, I do so with the knowledge that one day, when it is their time to grow old, medicine will have answers for them. I will not give up.